Diagnosis: Acute Myeloid Leukemia (AML). A Journey

On day +5, the side effects from the chemo and radiation started to emerge. George said his throat was hurting…like after you have a long coughing episode. He is also experiencing more fatigue, which is understandable as his blood counts are in the basement. He started feeling queasy off and on, but not nauseated. He is taking Imodium for the diarrhea, which seems to work (thank God!). He has a lot of gas in his belly that causes discomfort and frequent belching.

I went up in the afternoon and was with him when they brought his dinner, which by the way they do between 4:30 and 5:00! Ridiculous! He had ordered chicken parmesan which didn’t look too bad, except for the very al dente green beans. He had no appetite, but made himself eat it because he knew he needed the protein and calories. He is also aware that he will most likely develop mucositis (inflamed mouth/ mouth sores) in the coming days and eating will be more difficult. He is given a solution to swish around in his mouth three times a day, which will help protect his mouth to some degree. You can also get mucositis in the gut..I wonder if that’s what he’s experiencing?

I also brought George his work computer so he can work if he wants to. He is enjoying not having to think about work right now, but we do worry about what the future days and months hold and how many sick/vacation days he may have to use. It sucks that you have to think about that while you’re battling cancer and recovering from a transplant, but capitalism and the American health care system are what they are.

Today is Day +6. I talked with George this morning and was met with the usual complaint that he sleeps pretty well, but has to get up several times during the night to use the bathroom. That is due to the fluids they constantly have pumping into his body! Then he has to schlepp the IV pole to the bathroom with him, which is a pain in the arse in the middle of the night! Then someone comes in during the night to take his vital signs…I’m glad he is at least sleeping well when he is in the bed and left alone!

Today, he feels tired and his throat hurts to swallow. His mouth is more sore overall as well. No sores, but more like inflammation and muscle soreness, he says. They brought him something called “magic mouthwash” to use before he ate his breakfast. He said he was going to try to eat his breakfast first and if he needed it, use it. He was able to eat his breakfast without using it, but felt queasy afterwards. We have been warned these side effects would be appearing and we know they will probably get worse before they get better, which will happen once his donor cells engraft and start making new blood cells.

I haven’t decided if I will drive to Philadelphia to visit him today yet. It is an hour drive in some pretty stressful traffic and it costs me $15 every time I go ($5 to cross the Walt Whitman Bridge and $10 to park). Also, gas. But he is always so grateful when I come. I hate not to go! I’ll probably go. I do love him so.